I’ve had CIU a total of 5 years now…the 2nd year was remission. Besides that I’ve been in a full on flare for years now. I’ve been on xolair for 3 years and it’s worked like a miracle for the most part…until about the past 5 months. It started with a “rash” on my back and now I’m pretty much flaring all over my body, on and off. I indulged in wine over the holiday so it’s pretty awful yesterday and today. While it’s NOTHING compared to what it would be off xolair, it’s pretty disturbing. I’m on 300 mg once a month and my immunologist already said I’m on the max dose. Nothing ever worked for me besides xolair. My doc is a 6 hour drive away. Should I make the trip there for her to tell me I’m screwed or should I give it a go and beg for more xolair?!? I’ve also never tried that drug that helps addicts stop itching, maybe I can try that. Ugh, idk, I wish I didn’t even need the xolair! Ugh, rant over, thanks for listening
Trish Murphy What drug are you referring to that helps addicts stop itching? Didn’t know that was a symptom of addiction.
Alissa Trollinger I have read medical literature that supports updosing Xolair if lower doses are less effective. And people online seem to have increased doses too. I would being this up to your doctor. I have had 2 rounds thus far and they have not been effective. If the third round doesn’t help, I will discuss updosing myself. I don’t know if my insurance will support it, but I do know it is positively reviewed in medical lit.
Renee Cobb Alissa Trollinger what is your current dose? I’ve been on it over 3 years now and I’m not sure if it’s losing it’s effect or what. My doc said I’m already on the max dose for my height/weight, yet I see people in the group with increased doses like you said. I’ve basically tried everything else and nothing worked besides xolair. Hang in there…it may still work for you! It worked right away for me but for others it took 5 to 6 months.
Alissa Trollinger Renee Cobb, I’m on 300mg x month. I have my third injection on Monday, I have my fingers crossed. If this doesn’t work, I have an appt with my immunologist for mid-Jan to start cyclosporine. I have been on max doses of antihistamines for 3 months with daily flares (with the exception of last week, where I had 2 95% free days). To help w/the flares, I have been on low doses of prednisone for the last month. He wants to get me off of these and try the cyclosporine. But I keep hoping that the third round of Xolair will do the trick.
Leslee Sampson Alissa Trollinger I have had 300mg x month for 5 months. It wasn’t until the 5 shot that I any signs of improvement. When I went to get the 5th shot I was having a bad flair. Within a week I was pretty much hive free. I get some itching here and there, but I am doing so much better.
Michelle Pitts Caldwell Alissa Trollinger Back when I had a bad flare there was no Xolair. I took cyclosporine. I wasn’t in it that long.
Alissa Trollinger Leslee Sampson, that is really encouraging. I am hopeful that it will work…but I have a trip to the UK and Egypt in April and I feel like I have a ticking clock. I want to be hive free (or at least greatly hive reduced) by then. That gives me 3 more shots (for a total of 6). Fingers crossed!!
Kimberley Ann Mine gave me 450 the last two months…..side effects were terrible…..next week I’m back to 300. He was hoping the two increased doses would give my immune system a kick start or something. If he’s still not happy after my next dose then he will be switching me to a different suppressant. I actually had more break through hives on the higher dose
Renee Cobb Kimberley Ann good to know. Sorry that we all have to deal with this crap
Kimberley Ann Renee Cobb I thought my next shots were this coming week which made sense with more breakthrough hives. It’s not till the 8th. This should be interesting
Renee Cobb Kimberley Ann same here. I’m just midway through the month and I’m flaring pretty bad
Darnell Moore Landry Kimberley Ann I’ll tell you one thing…Santa is not getting milk and cookies left out for him next year….i only asked for one thing…and that was for a cure for all of you…so far i see no positive results…..please keep me informed…..love somebody’s mom
Karen Streator Smith I was hive free shot #3,4,5 then halfway to shot 6 they returned. My Immunologist said we can try increasing frequency as it is approved for asthma. The hives are better with then without but wish they would just leave.
Renee Cobb Karen Streator Smith same here! Wish they would just leave. I guess I’m lucky it worked so well for 2 years
Lana Kains Salomonson Mayo Clinic suggests xolair every two weeks if once a month doesn’t work. Trouble is that insurance won’t pay for it most times. The doc there says a new shot should be on the market in 18 months that helps those that dont see success with xolair.
Soren J Ateri Alot of people are on more than 300mg. You can do 300 MG every two weeks instead of four
Renee Cobb Soren J Ateri I’ve noticed…but not according to my doc. I’m also a much smaller than average person. Not sure if that has anything to do with it. I’m still going to push for more, or more often
Soren J Ateri Renee Cobb only if you were an asthma patient
Renee Cobb Soren J Ateri yep. Looks like I’m going to San Diego
Soren J Ateri She is referring to ldn, low dose naltroxan
Renee Cobb Soren J Ateri yes! That’s the one. My pharmacist mentioned it to me the other day and was just curious about it since I tried everything else and nothing helped. Besides xolair